Promises Kept and New Resolutions: PCORnet’s Year in Review

As we close the door on 2017 and begin a new year, it’s a good time to ask: has PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, remained steadfast in its mission? We pledged to enable people to make informed healthcare decisions by conducting clinical research that is better, faster, less expensive, and more relevant to their needs than what is currently possible. How did we do? What will we work toward in the year to come? ‘Tis the season for reflection and resolutions, so let’s dive in.

Better Research Through the Common Data Model

PCORnet taps data from numerous sources, which is what makes it such a valuable tool for researchers. But having numerous data sources adds complexity, too. That’s because seven different hospitals may capture the same heart attack in seven different ways. Enter the PCORnet Common Data Model, which is the tool that helps map these disparate sources to a common language, ensuring that there is consistency. PCORnet is constantly refining its Common Data Model, and in 2017, it celebrated the release of version 3.1., expanding the Network’s capacity to do more kinds of research in areas that are often overlooked. While the 3.1 release in 2017 was an important stepping-stone, even more exciting changes are on the horizon in 2018.

“In early 2018, we are set to
release Common Data Model 4.0,
which is going to include additional
tables where our partner networks
can store more data.

Lesley Curtis, PhD – PCORnet Data Committee Member

“In early 2018, we are set to release Common Data Model 4.0, which is going to include additional tables where our partner networks can store more data,” said Lesley Curtis, PCORnet Data Committee member. “These tables represent a big step forward for us because they will allow PCORnet to answer a broader range of questions that are important to our patient communities with greater precision.”

Faster Research Through New Data Sharing Agreement and SMART IRB

Institutional reliance forms and agreements may not be the most tantalizing piece of the clinical research pie, but they are vital in ensuring all stakeholders are on the same page when it comes to important issues like data privacy and the protection of research participants. They can also create a snag for study start-up and hinder progress if not implemented correctly with study teams and PCORnet partners. That’s why in 2017, PCORnet released a new data sharing agreement for its sites that clearly defines the standard terms that the PCORnet Coordinating Center will adhere to when it receives data from PCORnet’s partner networks. Version 2.0 of the data sharing agreement was released in May 2017.

PCORnet also worked in coordination with the National Institutes of Health’s National Center for Advancing Translational Sciences to further participate in the SMART IRB Reliance Platform. Institutional review boards were put in place to protect the rights and welfare of people participating in research. Approval of these boards is an important step in the research process, but having each site’s board review the same protocol is often time consuming, slowing down study start-up. The goal of SMART IRB is to maintain the rights and welfare of people participating in research while reducing unnecessary burdens. PCORnet has a unique opportunity to use SMART IRB within the Network, while simultaneously providing feedback and harmonizing its effort with the National Institutes of Health and other research entities.

Less Expensive Research via the PCORnet Front Door

Wouldn’t it be nice if reliable clinical research was not only faster, but also less expensive? With PCORnet’s Front Door, we are getting closer to that vision. In 2017, PCORnet opened its Front Door, offering potential investigators (including patient groups, healthcare organizations, clinicians, government, industry scientists, and sponsors) a central gateway to access and leverage PCORnet’s unique infrastructure and collaborate on patient-centered clinical research. Via the Front Door, investigators can request access to the PCORnet Distributed Research Network Operations Center to obtain aggregated data results for informing research project development. They can also find potential collaboration opportunities at a fraction of the time and cost than was previously possible. But you don’t have to take our word for it. Robert McBurney, co-principal investigator for the iConquerMS partner network, raved about his Front Door experience.

“As a user of the Front Door, we
were able to quickly reach
networks and clinics we normally
would spend weeks trying to connect with.

Robert McBurney, PhD – Co-PI, MS-PPRN, iConquerMS and CEO of the Accelerated Cure Project for MS

“I cannot overstate the tremendous value PCORnet’s Front Door provided my team of investigators. Every step of the process was thorough and efficient,” said McBurney. “As a user of the Front Door, we were able to quickly reach networks and clinics we normally would spend weeks trying to connect with.”

Research That Matters Through Collaborative Research Groups

Who should decide what questions need answering? Clinicians? Patients? Caregivers? Researchers? If we want to conduct research that is meaningful, the answer is: all of the above. That’s why PCORnet announced the launch of 11 Collaborative Research Groups in 2017. These groups, which focus on a specific disease area or community, are composed of people across multiple disciplines and are focused on looking at health challenges holistically to prioritize the research questions that will best help patients and clinicians make more informed healthcare decisions.

These groups also consider PCORnet’s infrastructure and how it can best be used to find answers to these questions. Their deep knowledge of the Network means that Collaborative Research Groups can identify funding opportunities where PCORnet is uniquely positioned to make the most impact.

Looking Ahead: a Sustainable PCORnet via the People-Centered Research Foundation

It was always PCORI’s vision for the Network to become a self-sustaining resource for the nation. To that end, in 2017 PCORnet investigators formed the People-Centered Research Foundation. This nonprofit is intended to advance and support the Network’s long-term sustainability.

PCORI’s principles of patient-centeredness and engagement are deeply embedded in the People-Centered Research Foundation, and the nonprofit boasts an all-star leadership team. Former Food and Drug Administration Commissioner Robert Califf chairs the foundation’s distinguished Board of Directors, and Kathy Hudson, former deputy director for Science, Outreach, and Policy at the National Institutes of Health, is its chief executive officer.

With these big changes already in play, 2018 is gearing up to be an exciting time for PCORnet. Stay tuned for more announcements in the coming months, and in the meantime, let’s all raise a glass to PCORnet’s productive 2017 and a healthier future to come for our nation.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

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